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One year after surgery, why am I still in pain?!

QuiltinouslyQQuiltinously Posts: 152
edited 06/11/2012 - 8:23 AM in Neck Pain: Cervical
This week, I saw my neck surgeon for the one year appointment, and he said that my fusion is solid, but he has no idea why I am still in so much pain. Right after my surgery, he told me that when he did my ACDF C5-6, that I had one of the biggest bone spurs compressing the nerve root that he'd ever seen and removed.

My surgeon and regular doctor have no idea why I have the same pain that I had before surgery. I actually think it is worse, but it's been a gradual worsening. My symptoms are:
- sharp pain at the base of my neck, like a pinched nerve feel
- right hand and arm pain and weakness
- neck pain at where the C5-6 site is on the right & back
- migraine headaches that come when I do much & irritate it

The post operation MRI and x-rays do not show any reason for the pain. I do not know what to do next. I'm afraid that it looks like I'm making things up for pain meds, but I'm not!

Does anyone have any idea why the pain is still there?
What should I do?
Thank you, Dee
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1

Comments

  • I am 1 1/2 years post op from a double fusion of my C5-7 and continue to have the pain I had before surgery. The pain is getting worse as time goes on. Only indicators are signs of mild arthritic area right above the surgery site
  • Hi Tom,
    Sorry you are in the same club of no help post surgery. It really stinks and makes all the surgery pain and money spent a big fat waste.
    Anyone have an idea why? Is it nerve damage or scar tissue or what?
    Thanks, Dee
  • Sorry to hear your still enduring pain. When is the last time you have had a MRI or a CT done, Was the pain ever better after the surgery did you get some relief at first and then it came back. Maybe you need to get a second set of eyes looking at the films. What types of things have you tried to get rid of the pain. Are you doing exercise on a daily basis. Have you been able to return to work and if so could your job becausing some of the pain. Please share with us some more information and maybe we could give some advise.
  • My surgery is also 1 year post-op and the pain I have mostly is at the base of the back side of my neck. I have limited movement of my neck and when I ride on a dirt or bumpy road, my pain increases. My NS has told me that what he did to my neck was about the max that could be done in one surgery, and the pain is likely from scar tissue and arthritus. He does not prescribe pain medications for me anymore except once in a while because I see my family doctor for this now (I guess NS's just follow up with xrays and office visits after about 1 year post-op. I also still have numbness and a cold feeling in my hands and forearms that comes and goes. I also don't know if everyone continues with some type of pain long after surgery has past.
    GOD BLESS ALL,
    KC
  • I have never stopped hurting.....it has been over 18 months since my surgery which was a revision. I have come to terms with it, I have heard scar tissue, nerve damage, arthritis. I think it depends on how bad your neck was before surgery and how much you had done. What can you do? Not much but do what the doctor tells you and pray.

    Sharon
  • Thanks, Sharon, KC & others too ~ I'm sorry you're still dealing with pain as well. We pay to go through surgery with time, money, and pain; it doesn't work! How discouraging!

    KC, you really had quite the surgery. Did it help at all? If I want to go back and read your previous posts, can you or someone else tell me how a person can do that? I remember on the old set-up, it was possible, but I can't figure it out.

    Sharon, I agree with you about praying. When you've had one or two surgeries and they don't work, what else can you do?! And God does answer prayers. He just may not answer them the way we like. I like to think that He is saying to me, "Not yet. I am not ready to heal you just yet as you have more to learn." And learn I am. How to be patient. How to empathize better. How to trust God more. Etc.
    God bless, Dee
  • No prior symptoms: 2005 fell on icy conditions, immediate paralysis ensued neck down - no feeling or ability to move. ER: MRI, CT, X-Ray showed mass on cervical spine, (Malignant Spinal Cord Tumor) w/compression of C2-C6. No option - do or die. Partial laminectomy/decompression surgery removed bone from C2-C6 and as much of tumor as possible. Followed by (I-131) spinal tap radiodine injection, 22 days of radiation to neck region and year's worth of R-CHOP chemo. 2008 severe collapse of C2-C7 cervical vert. ensued (result of first laminectomy), 20 hour surgery added new bone with reinforcement rods, plates and screws posterior and exterior to shore up head...Prepherial neuropathy pain is premanent, chronic soft tissue pain is permanent, but may dissapate with time - unknown. Deep bone pain is likey permanent, but may also dissapate with time - unknown. Extensive trauma to mind and body equates to: "Post Tramatic Stress Syndrome" Rehab Psych, (helps patient manage pain in other ways besides medication) and may help decrease need to depend soley on pain meds. The mind and body have been wounded and the bodies defense is to inhibit activity in order to heal. However, this inability for people is not healthy and therefore other means are necessary to work to manage handicaps...its going to take a long time to heal; patience, perservance and a good attitude are key to quality of living with this new "monkey" on our backs.
  • Dee i am alive and walking around so i guess my surgery was a success. i had my surgery 5 days after my mri and was told by NS's if i did not have this surgery that i was looking at death. the damage was already done to my spinal cord so my goals in life has changed. my goal is to keep my chin up and deal with the pain as good as i can. as you know we all have good and bad days and we all have pain everyday. as for the old post you might pm one of the moderators for this site. 7 circles you are in my prayers and i wish you the best in your recovery. btw 7 circles welcome to the forum.
    GOD BLESS ALL
    KC
  • Quiltinously: Froma fellow quilter. I am sorry and wish I could give you good news. I had a laminectomy almost five years ago. The pain is worse and am told it is Failed Back Surgery Snydrome. The pain keeps b=getting worse and I am losing the use of my right leg. THE major problem is no doctor wants to have anything to do with me. I am out there on my own.

    Just keep bugging your doctor to help you find relief.
  • Hi 7, KC, Normie,

    All 3 of you have been through way more than I have. I should not be whining when I read through what you all have been through as well as many others on this site. If I better understood why I hurt still... is it Failed Back Surgery Syndrome (but I've only had two on my spine plus carpal tunnel), is it Fibromyalgia, is it nerve damage, is it scar tissue, and so on??? I hope to find an answer as I'm really tired of doctors who are clueless or worse, think I'm faking it - and that really stinks!

    Good night and thanks again,
    Dee
  • Hi again, Normie,
    Can you still quilt? I used to make 1-2 bed size quilts a year plus a wall hanging or tablerunner, but no more. The pain is too great. I try, but I pay for it. I have a guest room quilt almost cut out, but already I'm paying for that with extra pain which makes me not want to go back to it. Pain sucks the fun out of too many things.
    Sorry I'm grumpy, bad pain day.
    Dee
  • I know what you mean. In May 07 I had Anterior Discectomy/Fusion of C-4 through C-7. No pain until Dec. 07 when I heard a pop in my neck and pain has gotten worse since.
    I'm going to Anesthesiologist/Pain Management tomorrow and have no clue what to expect.
    I do know I have Congenital Stenosis and C-3 is bulging alot more than a year ago.
  • Hi Grandmom,

    I'm sorry you're have so much pain. It really stinks, doesn't it?! I hope you get some answers at the doctor.

    Welcome to the forums. Everyone here is so kind and helpful. You're sure to find some answers and great advice. I have.

    Consider calling your surgeon's office and telling them about the pop sound. It could be that your fusion is not what it should be and all the pain management doctor will do is cover the pain and not fix it. Do both, but do especially call your surgeon!

    Keep us posted.
    Best to you,
    Dee
  • had mine 4 years ago and still get pain , once you get it it hits and hard the pain can be sharp lasting 20 secounds and feel like a hammer . or it can last days and feel like a dentists drill . expect migraines that go so bad you puke sorry to tell you this u may be lucky but most people i know suffer similar
  • I am only 2 months post acdf c 5/6. I have not gotten any better. In fact I keep telling the surgeon that I feel that I am worse now than before surgery. I had 3 bad discs 1 or maybe 2 inpinging the spine along with bone spurs. He fused just the 5/6. From the MRI report the 3/4 appeared to be the most damaging. His answer to this was I would then need a 3 level fusion. I still do not understand. I swear he thinks he's God.
    I had my 2 month post op last week. He told me that I am all better. No as a matter of fact I have never gotten better. I take that back some of the numbness in my arm hand & face is gone. I still feel like I am dragging my leg. He did xrays. He told me that I am fully fused! That is great news as it's only been 2 months & I am a smoker. I sorta have my doubts or I would be getting better. Or it's the other discs.
    I really wish that I understood the whole thing prior to surgery. He made it sound like a walk in the park prior to surgery. Now he tells me that it was a major operation & will take up to 1 1/2 yeras to heal.
    I feel for all of you that are going through this. I do hope that you get better soon.
    Kim
  • 2 months is still very early to be feeling much better. It does take a long time, 1 year is what my surgeon told me and then you are pretty much where you will be from then on. To be fused at 2 months is a miracle and a smoker also. I did not fuse and had to have a revision surgery. Some surgeons will not fuse more than 1 or 2 levels, I am fused C4-C7. It has been 19 months since my revision and I will have to say that my pain is worst than before any surgery. I have an appointment today with my surgeon to explore yet more symptoms. I feel that it is never ending.

    Sharon
  • I went through basically the same thing. I year post-op pain and was told there was no reason for it. A contrasting MRI finally showed no fusion between c6 and 67 so my pain was finally taken seriously. I also had to writ e anasty letter to the General Manager inorder to get these done. I now am a candidate for revision surgery on 12-04 and have been treated very nicely by the staff. Why don;t they listen to the patients and things would go alot faster?
  • I still quilt. I am a member of a guild that meets once a week. It is a God send. I have learned to use my left foot at the sewing machine. When I quilt I do it by hand. That way I only have to sit. I will never give it up.

    Sorry I took so long to write back, but I am just learning how to use this site.
  • I think doctors don't want to listen. They are never wrong and can do no wrong. They don't like to admit they don't know what they are doing. All doctors must have a middle name of vanity.
  • Hi all,
    I don't want to scare the crud out of folks who need surgery, because some times it does help. (And if your spinal "cord" is impinged, don't mess around, you for sure should have surgery - in my opinion.) Sometimes the problem is knowing if you're in the group of patients who is going to be helped or not. I found out afterwards that some of my pain is due to my lumbar spine if you can believe that, when all these years I was told it's just my neck. I knew better.

    If you think that the doctor(s) are wrong, they probably are and keep asking. When I finally got a full spine MRI, I was able to say "I told you so, it's not just my neck." Now I am doing everything possible to avoid a knife going near my lower back.

    Hang in there and ask for options.
    Dee
  • normie_rad said:
    Quiltinously: Froma fellow quilter. I am sorry and wish I could give you good news. I had a laminectomy almost five years ago. The pain is worse and am told it is Failed Back Surgery Snydrome. The pain keeps b=getting worse and I am losing the use of my right leg. THE major problem is no doctor wants to have anything to do with me. I am out there on my own.

    Just keep bugging your doctor to help you find relief.
    i was reading your post hope you don't mind me asking, i notice you have trouble with your right leg? i've had 2 cervical surgeries,after my second surgery i developed leg problems,my dr thinks it's from my lower back.(i don't believe) i think it is related to my neck, it twitches and once in a while feels as if it's going to give out.. may i ask what are your leg symptoms? thanks michelle
  • How are things going? My problelm is standing long enough to cut out a new quilt. I want to get started on one asap.

    I think it will help my mental state. That's the worse of things.

    My problem started with surgery so avoid at all cost. I was tols an anomally had to be removed. I wish I could get it back. Now this crud is affectling my stomach and I do enjoy good food.
  • How are things going? My problelm is standing long enough to cut out a new quilt. I want to get started on one asap.

    I think it will help my mental state. That's the worse of things.

    My problem started with surgery so avoid at all cost. I was tols an anomally had to be removed. I wish I could get it back. Now this crud is affectling my stomach and I do enjoy good food.
  • Hi,I had ACDF 5/6 6/7 with hardware one month ago, all pain was gone
    for two weeks. Now left shoulder and arm pain has returned at about 50%
    with some neck pain. How concerned should I be.
    thanks,Curt

  • newbe to this site and amazed so many have same experience.
    im 16mths after my c1/2 fusion and decompression and i also feel its alot more worse now than immediately post op. most original symptoms have returned with a lot of pain, numbness and tingling affecting my legs -especially down left side.
    as with u all - drs just say op was a success keep taking pain relief!
    have managed to return to work doing light duties but need to be very careful of timing of pain relief - can be totally out of it and woozy if taken prior to work. just need to grin and bear it till home time.
    hope u all have some relief.
  • I cant seem to come to grip with the fact I I will never be the same again no matter if i have surgery or I get the injection ect...
  • after a year and a half and just having another discogram with a CT scan it seems the vertebra just above my fusion has shifted. I had C5-7 fusion but now my C4-5 disc is bulging along with the shifted vertebra. I find out on Dec 5th if or when I'll have more surgery. The discogram shows pain coming from my C4-5. My C3-4 disc is starting to fail also
    Be Well
  • chefj said:
    I went through basically the same thing. I year post-op pain and was told there was no reason for it. A contrasting MRI finally showed no fusion between c6 and 67 so my pain was finally taken seriously. I also had to writ e anasty letter to the General Manager inorder to get these done. I now am a candidate for revision surgery on 12-04 and have been treated very nicely by the staff. Why don;t they listen to the patients and things would go alot faster?


    i had my surgury done last month on the 16th. and i'm still in pain alot of pain and now i have pain in my legs they feel like they are gonna go out and it hurts.. plus my x-ray shows that my plate looks crooked. to the left.. is that normal??? does everyone elses look like that???
  • c 5/6.. on the left side of my neck. 1 plate and 4 screws the doctor told me it would take only 2 months to recover.but I'M STILL IN PAIN.. and i can't take it no more.. i'm stiff my right arms hurts my Now legs hurts badly. and my spine just kills me.. my neck too. everything. i told the doctor something else is wrong but he just says.. my fusion looks great. but its cricked.. right..
  • I am so sorry that you all are going through this too. I am 2 weeks shy of my 4 month post ACDF c5/6. I have complained all along that I feel like I am getting worse. I had xray at 2 months & he told me that there was nothing wrong with my neck because he fixed it & that I was fully fused. Now I went for my 3 month & he told me that he does not know why I am not better & that the fusion was looking good. He did order an MRI. I will see him for results on Friday. I asked him if I was ever going to get better. He said to wait for the MRI results & if there are no other heriated disks (there were 3 before surgery) he paused & hmmm probably. I told him that that didn't sound very promising & again he said just to wait & see what the MRI shows.
    I have had to have my prescription "upped". I am now taking 30 mg MS Contin every 8 hours & 5mg perc. every 4 hours. This still doen't help as much as I'd like. So I don't know if it was really upped or just different. I am still in horrid pain & want to cry & scream out loud.
    Some of you were talking about your leg feeling as if it would give out. Mine too! I can't write much without dropping the pen. I feel off balance & literally bump into things. All of this was the same as before surgery.
    I am praying for all of our Dr.s to listen to us & help us get better. I do not want to live my whole life like this. I am too young & have lots in life that I want to be able to do. I understand that I am just 3 months but it should be getting better not worse?!
    Sorry for the long post. I am just extremely frustrated.
    :''(
    Kim
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